Posted , 5 users are following.
Can anyone give me some advice as to what to take to help?
I also gave sweat attacks every couple of hours. I'm down from 50mg to 25mg of steroids. Will these symptoms get better?
This is my first flare up. It started in May and I have just been diagnosed.
0 likes, 9 replies
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Fluffe Pindie68
Posted
Hi Pindie. Terrible to say but if you're a lady and a certain age... then that could be the 'sweat attacks' - or not going too or both :-) ... however apparently my specialist says it's a paradoxical thing.. you can be going like no tomorrow yet also be constipated!!!! I was so bad, I was hospitalised with it and the bleeding and the... well let's say it's been a rough road as I started May 2015 with everything starting from food poisoning.. long old road.. lots of screaming on my part to get things in the 'right direction' but I finally got there and did see the head specialist nearly 10 months later.. he was marvelous.. not withstanding the steriods et al. I was put on Laxido 4 times a day and even had a couple of rounds of picolax (a lovely form of 'pixie dust!' as I describe it once all clears out) that managed to move everything while I was heading in that right direction. Now I'm just down to the laxido when I need it but I've also gone finally gone into remission. Pains are still there but I'm more of less 'normal' again. It did take some time... nearly five to six months for it to settle though every once in a while I do feel somwhat constipated with pain under my ribs and I also drink loads and watch what I eat.
I'd speak to your specialist as he/she can prescribe these (They're not over the counter) and possibly do a 'clear out' for you if your specialist thinks it is right for you - you need to be very careful as most over the counter laxitives are not colitis friendly as it's got to do what is in them and I would steer clear of them.
Pindie68 Fluffe
Posted
Thanks for the info. I'm not going through the menopause, if only! My consultant said it was the steroid sweats which is common apparently. I'm hoping that as the dose is tapered more the side effects will subside. The bloating and moon face are uncomfortable. The consultant told me to take moivcol as a laxative which I did but the bleeding, which had stopped, came back which worried me. I'm also suffering from insomnia which he said were caused by the steroids. I think my UC is stressed related so I'm trying to be calm.
a60450 Pindie68
Posted
Pindie68 a60450
Posted
Fluffe Pindie68
Posted
I was lucky that I didn't get really any side ffects other having energy to burn... Or was that insomnia!!! I was actually bleeding so badly, it was like huge clots... Even in the hospital. It took two goes of the picolax that moved the earth... I mean me ?? And then after that the bleeding actually stopped right after like a miracle... 11 moths later... I know we all seem to react differently to different things but it was only after I was cleared out the bleeding completely stopped. I then was weened down from 40 mg pred. Then onto azathiroprine with no side effects so far! 8 months bleed free....
yes... Stress does play a sure huge role in how you feel! I hope you manage to get cleared out... I would still talk to him about it as he may talk about a dose age that could work using the movicol....maybe a slight tweak or a one-off to get things moving?.... My specialist also did a few X-Ray's to check on it progress too... I was four laxido sachets a day for three months plus another picolax dose during.
Pindie68 Fluffe
Posted
Thanks for your help. All I talk to friends about nowadays is my toilet habits!
I had X-rays last week as the consultant wanted to rule out any obstruction. Also blood and stool tests so hopefully the results will be ok.
I feel ok in myself and the UC symptoms are so much better it's just the steroid side effects now.
Fluffe Pindie68
Posted
Sorry for the late reply.. we were pretty much in a WiFi no zone!! I hope everything went ok and they were able to do something to help you feel better in terms of moving things along so to speak. The main thing is the UC symptoms are better!!!!!!! Once you wean off the steriods - then, if like me, you'll stop bouncing off the wall!!! Though I must admit, my house was never cleaner what with all the energy I had!
OzMal Pindie68
Posted
Hi Pindie68, UC is such a pin in the butt, excuse the pun but it is. Hope stuff is working out for you though.
Have been there blocked and going at the same time, Geez what a trip! I cut out fibre and added lots of water, and I hate water, unless it has had hops soaking in it
My journey started 16 years ago, been a pretty rough road for a while, what with specialsts saying time to get rid of all my colon, I jumped onto the NOPE train straight away. Even went down the azathioprine path near bloody killed me...
After 13 months of being anemic from blood loss dropping heaps of weight & bi-weekly blood test (started to look like a junkie from needle marks) found this little gem "e407" food additive. Google that bad boy!
I then became aware what this stuff is in and it is very surprising what it is in, did a nil by mouth for 17 days, a bit hard but what was the other choice?, GP did not like it, but it did pay off.
It seems if if you can give the old colon a few days off it will start to repair itself, clearly that means no solids for a while, I believe in the UK at the first sign of UC youre in Hospitial for 15 days with Nil By Mouth, thats were I picked up on it, had a visting UK doctor at local clinic, they would not do that here in Australia unless youre knocking on deaths door, even then it would be a coin toss.
Now in remission for a 12 months, living the dream.... using Salofak and 25mg Prednisone daily.
Big thing is to try live a stress free day (yep hard when youre leaking claret) and in heaps of pain. Only fellow UC'ers would understand.
I found dairy was a bugger, tried lactose free milk and that worked, investigate if you diet has E407 and get rid of it.
You should be able to get weened off the steriods soon, but may have to keep taking the mesalazine (Pentsa Salofalk) for ever.
Just remember UC WILL come back, sooner of later, the thing is just keep looking for it, as soon as you potty habits change get down to the GP and get that prednisone into you, lots of water & soft foods (no corn) to take the pressure from the colon.
Just remember you have to look back to go forward.
Good luck...
Pindie68 OzMal
Posted
Many thanks for your reply. Lots of ideas.
Mine is deffo stress related. Lost my dad at the same time the company I work for was bought by another and I had lots of HR to sort for 150 of my staff. This is when the UC symptoms started. My bestie has gone through the same over many years but she lost her colon and now has a bag and has pushed me to get help which I have.
I have realised that water helps which I hate so I persevere.
Today was a bad day but I have few of these now.
I'm down to 20mg steroids tapering to nil over the next 4 weeks. Keeping at 4.8g asacol for next 3 months. Hoping to get back to gym this week to try and help shift the weight from the steroids.
If only I could sleep!!